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L-W-O Community

Primary & Secondary Lymphoedema Online & in the Community

L-W-O End of Year Report 2019

Author: Gaynor Leech, Founder of L-W-O

 

As 2019 draws to a close, it’s time to reflect on our year, it has been challenging, stressful and at times I have seriously asked myself “why am I doing this”?  The answer is simple for the most part I enjoy raising awareness of lymphoedema and I am still as passionate as I was six years ago when I started this journey.

How does L-W-O operate?

The most difficult aspect of running L-W-O is dealing with the business this year there were some tough decisions to make, whether I was going to go back to running L-W-O by myself with the support of Admin on our social media or to go through the rigmarole of getting full charity status. The decision I made was to go back to running L-W-O by myself with the support of our online volunteers and asking for volunteers for each community event I was invited to attend.  I do all the admin, handle the finances with the help of Quick Books which keeps them in order and produces the professional profit and loss accounts to keep things straight.  In addition, I do all the graphic/posters as well as overseeing the day to day running of the group. 

People often get confused about our charity/non-profit status so let me clarify.  Our group falls into the category of a group whose income is below £5,000, the normal threshold for registration, so we do not have to register with the charity commission. Our average earnings/expenditure generally falls below £1000 p.a.  The expenditure goes towards insurance, software both accounting and graphics, stationary, printing costs, web hosting, domain names & relevant costs for community work.  No volunteer including myself receives a wage.  I do not charge for the use of an office or utility bills, including broadband/mobile costs which are all absorbed by my household expenditure, even though legally I can.  L-W-O receives no funding and we survive financially from the generosity of our members donations however; it has been a challenge this year and at the time of writing I am not sure how we will survive financially next year.  I am just about managing to keep us advert free.

Presently L-W-O has two bank accounts we have a Lloyds Bank Trustee account and a PayPal Business account and up until now donations although not all go into PayPal. Banking is changing with many banks tightening rules and security, it is very difficult for small groups, clubs’ societies to even have bank accounts.  PayPal have changed many of their rules and withdrawn their access card, which gave me the ability to pay bills online.  We don’t qualify for their business debit card without a business registration number or tax exemption certificates.  The convenience of PayPal was the donate buttons because it meant I didn’t have to put bank details on the website.  I will be closing PayPal soon which will cause a huge problem with regards to donations.    

Our policy documents have been produced with the guidance from WCAVA and NCVO.  L-W-O is a member of both these organisations.  I do not like having to put terms and conditions in place but dealing with our growing membership it has become necessary, it helps keep abuse and complaints to a minimum and I know from speaking to other group admins how lucky we have been.  This information I hope will give you a sense of what it takes to run our community and keeps everything transparent.

Social Media

L-W-O has been moving towards being a community for the last 18 months but this year the word ‘Community’ has been added to many of our groups giving more cohesion and this has strengthened our identity.   Many of our URL’s have been shortened to make them easier to find.

Our Facebook Online support group has seen a slow growth this year with 918 members living in the UK and 213 members coming from 34 countries making a total of 1131 members.  Our other social media platforms have grown faster with 1983 followers making our community a 3197 strong, with Instagram and Twitter growing the fastest.  This year we joined the Health Unlocked Community it is too early to say how this will progress.

Our children’s group has also grown in addition to our families we have several experts on board who have an interest in paediatric lymphoedema and we have welcomed more European families.

My granddaughter Paris spent some time redesigning our Pinterest account and taught me how to use Instagram to get more out of it this platform which greatly improved our reach and following.  The website in 2018 averaged 208 viewings per day, during 2019 the average has been 302 viewings per day.  There have been several major rewrites with the pages that became too long split into separate pages.  I undertook several online digital courses this year to help me understand Search Engine Optimisation (SEO) and I have looked at ways at improving layout and how to get the web pages to load faster.  

Training Days

Our members/followers will know from the beginning I have attended many different training events or conferences these, help me run L-W-O to learn more about lymphoedema and continue working as a volunteer in a challenging voluntary sector.  

The most exciting training day I attended was the radio interviewing course sponsored by Coventry & Warwickshire’s year of Wellbeing and run by Radio Plus Coventry.  I was then interviewed by Sam Ingram from Radio Plus Coventry with the interview being recorded and aired on Radio Plus two weeks later.  Out of the blue I was then invited by Sandra Godley at BBC CWR to talk about lymphoedema, this interview you will find on our You Tube channel, although nerve wracking it was fun to do and helped raise awareness of lymphoedema across Coventry and Warwickshire.

In the Community

This year I deliberately cut down on our community events as such a lot of work goes into these.  I did two Cervical Cancer Awareness events one in Coventry with the help of L-W-O member Martine Payne and the second in Nuneaton on my own.  In August I attended the Health & Well Being Event for Macmillan with the help of my family, The Living Well Beyond Cancer Event at UHCW on my own and finally the Well Being Festival at the Ricoh Arena Coventry with the help of my family.  Several events I turned down; the lack of volunteers really hampers the amount of work we can do to raise awareness in the community.  I am extremely grateful for my family who have stepped up to help when it is difficult to find volunteers from our group.

While there is always room for improvement, I am really pleased at the information stand we can now display at Health and Wellbeing Events but most importantly it’s all about raising awareness of lymphoedema.

The European Patient Advocacy Group 

This year I am thrilled that we were invited to join The European Patient Advocacy Group (ePAGs).  This was totally unexpected, and this led us to joining Rare Connect as part of their Paediatric and Primary Lymphoedema forum which means we have access to much more information to help and support our members.  This also means that I am now in touch with many more members of the European Lymphoedema community.  I would like to thank Pernille Henriksen for keeping us informed on Paediatric and Primary Lymphoedema and all the other support she has given me and our group this year.

Small Successes

This year I had the privilege of being interview by both The Lymphie Life and Grapevine Coventry & Warwickshire with both interviews being published on their websites and I was also asked to write an article on my BLS Conference experiences over the last two years this was published in the BLS News & Views Autumn Edition.

Due to a health and well-being event I attended in November, issues raised has led to me to corresponding with Royal College of Radiologists about the side effects of radiotherapy treatment in relationship to Lymphoedema it will be interesting to see how things develop in 2020.  I have also spoken to BLS on this subject via email and they have also emailed RCR to offer any assistance they might need in producing or reviewing documentation that will ensure future cancer patients will be given the full facts about the side-effects of radiotherapy treatment in relationship to lymphoedema, so that patients can make informed choices.
 

The Challenges for 2020

The biggest challenge for L-W-O will be to raise enough money to update our very tired looking banner, new leaflets and information cards. 

 Our objectives will be to:

  • Continue to raise awareness of lymphoedema
  • To undertake highlighting the importance of the lymphatic system
  • To continue to build working relationships with other organisations 

There is a great deal of work going on to highlight Genital Lymphoedema, Pelvic Radiation Disease and Paediatric Lymphoedema and I look forward to hearing and sharing information on these topics in 2020. 

Lymphoedema/Patient Advocates voices are being heard and it is slowly being accepted that we too can contribute whether you are in Canada, Europe, UK or the USA we are talking to each other sharing news and views, all with the common cause of raising awareness of lymphoedema.  I believe things are changing for the better I know from the conversations I have had this year not everyone agrees with me, but I have seen small positive steps especially in attitudes.  This year more than any other those living with lymphoedema are making a difference.  "Is the job done?"  Absolutely not, but there is a tiny glimmer and as one of my friendly acquaintances stated, “We are the generation that are beginning to shout the loudest”.

 I would like to thank all our members, followers and supporters for your continued support

Happy Christmas

Wishing you all Happiness, Love and Peace

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